Actinium shortage causes delay in promising new trial

[HopingForTheBest1]

I thought I was about to start and be one of the first participants in this new trial - NCT04946370. A triple therapy using 225Ac-J591 + pembro + enza. Doctor expects a 3-5 week delay to obtain sufficient quantity of Actinium, which is agonizing for me.

Most recent scans, compared to 5 weeks prior, indicate two new 2-3mm nodules in my lung which is not conclusive for additional metastatic cancer at this point. Other areas appear stable, although PSA is up from 10 to 15. I hope there is enough time for me to wait, or need to move on to another treatment.

As of now, I am anxiously waiting and putting together my Plan B with my Oncologist's guidance. Expect chemo will be next likeliest choice, which I have not yet had. Possibly Carboplatin & Cabazetaxel combo, especially since I am BRCA2+.

[Tall_Allen]

I read that Bill Gates' company TerraPower will be producing enough Ac-225 to supply the worldwide need from Thorium. I don't know the timeline. Can you get in their Lu-177-J591 trial while you wait?

[HopingForTheBest1 in reply to Tall_Allen]

Unfortunately, not a viable option at this point.

[NWLiving]

I hate the uncertainty and that the clock is ticking. I hope they get their act in order. This is a medical failure.

[Fanger1]

You are in a tough position . I hope the materials come sooner rather than later. While you are awaiting the Ac, perhaps you can work on getting your immune system charged up with natural supplements, diet and exercise. I hope you get started soon with treatment, keep your positive attitude and know we are all praying for you🙏

[HopingForTheBest1 in reply to Fanger1]

Trial doctor doesn't want me on any supplements, except calcium and vitamin D3. I exercise at a gym 5x a week. Dieting has been extremely difficult for me; probably due to anxiety. I do need to lose 30+ pounds.

[Fanger1]

Wow, that's ok. Keep working out, You can get nutrients from switching up the diet. Wonder if you could add in Zn, Mg and Bo and Vitamin C?

[esmitee]

May I ask if your seeing Dr. Tagawa at Cornell?Reason why I ask, is I'm seeing him and I'm going on July 20th to sign consent forms for the trial , #20-01021288 the dose escalation for 225ac and J591 combo, or #20-08022486, phase 1/2 of 225ac-J591 plus 177LU-PSMA-I&T. I was also told of a shortage from them, but I'm pretty sure they told me it was the 68 ga they use for the PSMA Scan, so I'm really confused as to how I will be able to enroll. I never did a Trials before and I need a lot more information before I sign up. But maybe they are both in short supply?

[HopingForTheBest1]

Yes, Tagawa. You should be able to get additional info on any trial by going to clinical trials.gov .

[HopingForTheBest1]

UPDATE - Actinium supply is back. But this new trial still hasn't started yet. Now the delay is due to administrative issues. Anxiously waiting. In the meantime I will be going to Johns Hopkins on July 28 to meet with a doctor from Dr. Sam Denmeade's team to discuss their trials.

Met with my MO yesterday, 7/20. He said that I appear to be stable enough, despite my rising PSA, to be able to wait for the trial to start. We had a detailed discussion about starting chemo. He said it will always be an option for me. Right now it would be OK to pursue this promising trial.